YSC Tour de Pink – Why? Well, Why Not?!

Me, at far right, with fellow survivors at the finish of the 2012 Tour de Pink.

Me, at far right, with my fellow survivors at the finish of the 2012 Tour de Pink.

Many people think I ride in YSC Tour de Pink because I have been involved since day one and think “how can I not.”  In all honesty, that is a part of it, but the biggest reason I ride is … because I can.  Recently someone asked me how I get up every day.  After all, I have stage IV breast cancer with metastasis to my brain, so how do I get up, go to work, run errands, go on vacation, go out to dinner, have fun etc.?  My response is, “How can I not?”

What is the point of going through treatment and trying to get healthy if you are not going to enjoy every minute?  Realistically if cancer doesn’t kill me, something else will, and I have zero control over that. So I want to enjoy all the time I have and all the experiences I can make.

Tour de Pink is one of those experiences.  Since Matt Purdue and I started the East Coast Tour de Pink in October 2004, it has been my favorite athletic event EVER! I love being on my bike, but more than that, I love the community we create on the days we are all together — riders, volunteers, supporters, logistics and staff.  I always say if the world could be like the traveling community we create every year it would be an amazing world — no war, no hunger and everyone is happy.  And we do create this world for three whole days.
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I challenge anyone to experience what we create in these three days.  It’s a no-blockheads-allowed event.  Everyone takes care of everyone else both on and off the bike.  The people you meet become life-long friends even if you only see them once a year.  It is as if you saw them yesterday.  There is a camaraderie, compassion and emotion that I have never seen before and do not see or experience anywhere else.

This is why I ride.  Because I can and because of the people this ride has brought into my life.  Once a year, every year, for as long as I can pedal that bike.

Join me.  This truly is the ride of a lifetime.  I promise!

Editor’s Note: Lisa J. Frank is the current YSC board president, a founding member of the Young Survival Coalition, the co-founder of YSC Tour de Pink and the author of the blog You’re Crying on my Cashmere.

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Remembering Dr. Irma Russo, Dedicated Breast Cancer Researcher

Me, at left,  with Drs. Jose and Irma Russo

Me, at left, with Drs. Jose and Irma Russo

In 2006, when I was receiving treatment for Stage III breast cancer at Fox Chase Cancer Center in Philadelphia, I had no idea that on the other side of the building was a researcher who had been working diligently for over 30 years trying to find a way to prevent the disease that had ravaged my body.

Dr. Irma Russo was a pioneer in identifying the mechanisms of breast cancer prevention and was working to develop a hormonal treatment for disease prevention using the pregnancy hormone hCG. I was very sad to learn that Dr. Russo passed away from ovarian cancer last week. We young breast cancer survivors have lost one of our champions.

I first met Dr. Russo a few years after my diagnosis. She and her husband, Dr. Jose Russo, had put together an innovative program for breast cancer advocates called “Researcher for a Day.” We had the opportunity to shadow researchers and actually participate in their workday with the goal of making us more informed advocates.

Some of us learned how to seal chunks of tissue in paraffin blocks. Others learned how to analyze the genetic instructions in rat RNA. I had the daunting task of dissecting a rat and removing the mammary gland in order to extract the RNA for analysis. Throughout it all, Irma and Jose went around to each group of advocates encouraging and educating us. Having fought the disease as patients, they wanted to teach us how the disease was fought in the lab.

Over the next several years I got to know Dr. Russo better as I worked with her on several research projects. Once she had helped train advocates in the lab, she was eager to incorporate the unique perspective of a breast cancer patient in helping her to become a better researcher. She often asked survivors to participate in writing research grants and solicited our recommendations from the very beginning of the process.

Most recently, Irma and Jose Russo participated in the Young Survival Coalition’s Research Think Tank to help YSC determine the most pressing research questions to improve the quality and quantity of life for young breast cancer survivors.

When YSC was looking for researchers to be a part of this groundbreaking initiative, the Russos were some of the first to sign on.  To YSC’s invitation to participate, Irma promptly  responded, “The risk of breast cancer in young women is a topic very dear to me, and I will be quite pleased in participating in this symposium in collaboration with scientists and advocates.”

Not only did the Russos “sign on,” but they participated as a part of two work groups:  the Pregnancy workgroup and the Identification of Factors that Increase the Risk of Breast Cancer in Young Women workgroup. At the meeting, Irma was passionate about working with advocates and in particular young survivors to share her ideas and research.

Dr. Irma Russo and her husband, Dr. Jose Russo, celebrating their 45th wedding anniversary at the first YSC Research Think Tank meeting.

Dr. Irma Russo and her husband, Dr. Jose Russo, celebrating their 45th wedding anniversary at the first YSC Research Think Tank meeting.

In fact, the Russos elected to spend their 45th wedding anniversary at the YSC Research Think Tank because they felt so strongly about YSC’s research agenda.  With a little champagne and some cake, we celebrated their special milestone with them.

Dr. Irma Russo made a tremendous impact in the world of breast cancer research over the years. Together with her husband, she published five books and more than 200 research articles. As one colleague recently commented, “The collaboration between Jose and Irma was so deep that it was, at times, impossible to determine where one ended and the other began.”

Anyone who saw the two of them together recognizes the truth in this statement. But she was also very much her own individual — founding the League of Women Against Cancer in 1994 whose mission is to provide education and help for women with cancer and deciding several years ago to learn to scuba dive at the age of 66.

Until the time of her death at the age of 71, she dedicated her life to better understanding and prevailing over breast cancer. While her legacy will live on in her many achievements in research and the more than 50 physicians and scientists she trained and mentored over the years, it was her willingness to give a scared young mother who knew nothing about breast cancer the power of knowledge and the support of her convictions that will forever remain with me. She will be missed.

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CWS Knocks One Out of the Park

Last Wednesday, I was in a sweltering Washington, D.C., to attend the annual Congressional Women’s Softball game with Young Survival Coalition’s CEO Jennifer Merschdorf. This would be my first time attending the event, but it was apparent what a difference five years had made!

Members of the organizing committee told me how in 2009, the women of Congress played members of the political committees in front of a small crowd for the inaugural game.

Now in 2013, the Congressional Women’s Softball game has become one of the most anticipated events on the Hill, with women of Congress playing their new rivals, the Bad News Babes (women of the Washington Press Corp), and packing the Watkins Recreation Center with over 1,000 attendees!

Young Survival Coalition is so honored to be a part of this event.

YSC Volunteers at the 2013 Congressional Women's Softball game.YSC Volunteers at the 2013 Congressional Women's Softball game.

YSC Volunteers at the 2013 Congressional Women’s Softball game.

As soon as we got to D.C., I could feel the energy surrounding this game. Jennifer and I were able to attend the last volunteer coordination meeting where we talked to them about YSC’s programs and where the money from the game would go.

Volunteers included staff from around the Hill, members of political committees and employees at various banks and law firms in the D.C. area. We were so thankful they were able to take the time from their incredibly hectic schedules to work the game and for showing such enthusiastic support for YSC.

Throughout the next few days as we met with players of both teams and their supporters, I was thrilled to experience the high energy surrounding this event. Journalists, politicians, staffers, interns and aides, all of whom regularly spar on the political battlefield, now come together in a truly bi-partisan effort to raise awareness that young women can and do get breast cancer.

Echoes of the Press Corps team captain Abby Livingston’s sentiments were heard, “I think what’s amazing is that you could not have had this game twenty years ago.  It’s really great that there are this many women in Congress.”

The softball game introduces women on the teams to a small community of their peers who understand the political work culture of D.C., and can give advice and support to the same cause: supporting YOU, the young women affected by breast cancer.

Over a dozen young survivors from the Washington D.C. Face 2 Face (F2F) Network were present, meeting with some of our nation’s biggest lawmakers to strengthen the voice of the breast cancer community.

This year, it’s exciting to say that the organizing committee more than doubled their fundraising efforts and raised over $115,000! The money will go to providing education, support and empowerment to all young women affected by breast cancer across the nation.

2013 Congressional Women's Softball Game Results and Awards

Please take a moment to join me, my colleagues at YSC and all the young women we serve in thanking Kate Houghton, Atalie Ebersole and Natalie Buchanan of the organizing committee as well as the Congressional and Press teams for dedicating the past two months to preparing for and playing in last week’s game. A special thank you to our sponsors McDonald’s, Novartis, PepsiCo and Toyota and our many partners for their continued commitment. Last, but certainly not least, YSC’s D.C. F2F  leader Erin Price-Schabert who organized the survivors’ participation and put a face to young women with breast cancer in D.C.

THANK YOU and until next year!

Learn more about the Congressional Women’s Softball game and check out the 2013 rosters at the official event website.

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Breast cancer stole my pretty, but I snagged it back.

Ten days after my diagnosis, I started chemotherapy. I decided to take some sexy photos before my mastectomy. I never intended to show them to anyone. These photos were just for me. I wanted to capture and freeze this time in my life — my confidence and my body — before I entered the unknown.

amanda nixon guest blog 03.jpgAll of my hair fell out about three weeks later. My right breast was removed. I had daily radiation treatments to my bare chest wall for eight weeks. I had to bare my chest to doctors, nurses, medical students and surgeons on a weekly basis. This was the most humbling experience of my life.

I spent an entire year without my right breast.  I barely felt alive, let alone beautiful. My fingernails blackened, my eyebrows diminished, I stared at myself in the mirror – bald and lopsided – and the only thing I could do was remind myself that “pretty is as pretty does,” but I sure didn’t feel pretty. Breast cancer stole my pretty until I stumbled upon www.keep-a-breast.org.

I had been searching online for a photographer that would be willing to take photos of me with a single breast but was not impressed with what I was finding. I was interested in a snapshot of this time … single photo where I could see a glimmer of the old confident me would suffice. I was just about to let that wish go when I found Keep A Breast.

Keep A Breast made plaster molds of women’s busts and auctioned them off to raise funds for breast cancer awareness. I thought this was just fantastic. I emailed right away and days before my reconstructive surgery, I had a plaster mold made of my torso by the Co-founder of the organization, Shaney jo Darden. When the mold was complete, she took a photo of me with my cast, and we hugged goodbye.

Several months later she invited me to the Roxy Headquarters for their annual Think Pink event and, to my surprise, presented me with my beautifully painted cast in front of the entire company. The cast was inscribed, “No Gain, No Loss, Only Change.” I cried when I first saw my form because it was the first time I had seen myself as beautiful since my diagnosis.

My completed cast.

My completed cast.

Seeing myself as a work of art, with my body immortalized, allowed me to appreciate the beauty of my body at that time: the balance of femininity and strength.  The cast helped me see the juxtaposition of my two sides and life. It was time for me to embrace life and get my sexy back.

I opted for a modified micro-vascular DIEP flap reconstruction on my right breast. Basically, the doctors created a breast out of my stomach tissue. After this reconstruction, I finally felt balanced: both physically and mentally.

I slowly began dating and found myself in a long-term relationship with an amazing man who loved my scars. And everyday I wake up to see the man-made breast, the scar from my left hip to my right hip, tattooed nipple and I remind myself: THIS IS BEAUTY.

Ironically, in 2010 I helped start and run the support program that allowed me the opportunity to see the beauty in my form and myself six years ago. Partnering with the Young Survival Coalition in 2012, the Treasured Chest Program offers a variety of events throughout the country where breast cancer survivors can receive their own breast cast, meet other young breast cancer survivors and participate in other support activities.

The Young Survival Coalition/ Keep A Breast Foundation’s Treasured Chest Program is a free program that provides DIY Breast Casting Kits to any breast cancer survivor who would like to make a mold of their torso at any point in their breast cancer journey (before surgery, after lumpectomy/mastectomy or after reconstruction).

Through the Keep A Breast Foundation and Young Survival Coalition partnership, we have expanded our reach to more young women diagnosed with breast cancer, as well as our ability to offer education and support.

Please share our program in your community and help other women find their beauty.

Xoxo

Amanda Nixon

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The Women of Congress & Bad News Babes Battle for YSC

Me throwing out the first pitch of the game in 2012.

Me throwing out the first pitch of the game in 2012.

2013 is a year of many milestones for YSC: in November our organization turns 15, and, in just a few weeks, the 5th Annual Congressional Women’s Softball Game will take place.

On Wednesday, June 26th, Women Members of Congress and the women of the Washington Press Corps will once again take to the field to benefit YSC. I’ve had the honor of attending this amazing event for the last two years and cannot wait to head down to D.C. for this year’s game.

Since the first pitch four years ago, each spring finds our female elected officials getting up early (@ 7 a.m.!) to practice and prepare for their common enemy: the press corp’s Bad News Babes, who won last year’s exciting 13-10 battle.

I’m sure the Members of Congress are itching to win the 2013 game trophy. The reporters must be worried, because I’ve heard there’s been a little pre-game spying going on and even some smack talk – all in good fun.

This year is special not only for being the fifth anniversary of the game, but it is also a very special anniversary for one of the game’s co-founders, Rep. Debbie Wasserman Schultz (D-FL), who is now a 5-year breast cancer survivor.

In 2009, Wasserman Schulz, along with Rep. Jo Ann Emerson (R-MO), reached across the aisle in an unprecedented, bi-partisan effort to support women’s health and raise public awareness of breast cancer in young women.
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Every year, leaders and luminaries from across U.S. politics and journalism have attended this game and lent their support to YSC and all young women affected by breast cancer. I would be thrilled if you could join me at this year’s game to help us applaud the dedication of all the players and coaches and cheer on both teams and thank them for their efforts.

Tickets are available online for only $10. If you can’t make it to D.C. for the game, please consider making a donation to this event, which has raised more than $200,000 for the programs, support and resources that YSC provides to young women affected by breast cancer every day.

If you can’t attend the game, be sure to catch the play by play on our Twitter and Facebook and Instagram pages. If you are at the game, please post your photos and use the game’s hashtag: #CWSG.

I’d like to also thank lead partner McDonald’s for sponsoring this game for the third straight year as well as Novartis, PepsiCo and Toyota and our many partners committed to fighting breast cancer in young women. A complete list of our sponsors is available on our game website.

The women Members of Congress will be captained by Sen. Kelly Ayotte (R-NH), Sen. Kirsten Gillibrand (D-NY), Rep. Shelley Moore Capito (R-WV) and Rep. Debbie Wasserman Schultz (D-FL).

The D.C. Press Corp team will be captained by Brianna Keiler, CNN; Abby Livingston, CQ Roll Call; Amy Walter, Cook Political Report. Dana Bash, CNN, and Carrie Budoff Brown, Politico, are Captain Emeritus; Learn more about the Congressional Women’s Softball game at the official event website.

The 2012 Congressional Women's Softball Teams.

The 2012 Congressional Women’s Softball Teams.

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Human Genes Are ‘Products of Nature’? Isn’t This A No-Brainer???!!!

In a landmark case today, the United States Supreme Court held that human genes are “products of nature,” and cannot be patented. I don’t know about you – but to me this seems like common sense.

However, like all things in life, the complexities are in the details. For instance, the Court also determined that composite DNA (cDNA) which is synthetically created is entitled to patent protection.  So what does all of this mean? And what is cDNA? US Seal

Let’s look at what we know:

·         Mutations in either BRCA 1 or 2 genes predispose a person to certain cancers including breast and ovarian cancer. 

·         These gene mutations can be passed down from generation to generation, from either the mother or the father’s side. 

·         With a genetic mutation in BRCA 1 or 2, a woman is five times more likely to develop breast cancer than a woman in the general population. 

·         Most important, we know that women diagnosed with breast cancer under the age of 40 are more likely to have these genetic mutations. They are therefore frequently referred for genetic counseling and testing.   

If you haven’t been following the Supreme Court case, here it is in a nutshell:  Myriad Genetics is the company that discovered the location and sequence of the BRCA 1 and 2 genes and developed a test to determine if a person has a mutation of either of those genes. (Side note: this is the test Angelina Jolie used that received so much media attention recently). Because Myriad held and enforced the patents on BRCA 1 and 2 genes, it was the ONLY company that could conduct testing for mutations.  These tests cost upwards of $3,000. So if you wanted to be tested for the mutation and didn’t want Myriad to do the testing or if you wanted a second opinion … it was not possible! Myriad was the only company allowed to do the testing.

In court, Myriad argued that the company’s discovery of the location of BRCA 1 and 2, as well as its ability to extract those genes for testing, entitled it to a patent on BRCA 1 and 2. The Supreme Court has now rejected those claims. The Court stated, “Myriad did not create anything. To be sure, it found an important and useful gene, but separating that gene from its surrounding genetic material is not an act of invention.” 

The Court did find that, “the lab technician unquestionably creates something new when cDNA is made.” It therefore, can be patented. What is not clear (to me) from the Court’s decision is the role of cDNA in Myriad’s testing and whether its finding that cDNA can be patented affects Myriad’s exclusive claims to BRCA 1 and 2 testing. 

As I see it, opening the door to healthy competition which could lower the cost of genetic testing and make it appropriately accessible to more young women would be a great outcome; allowing other companies to perform BRCA testing could allow people to obtain a second opinion – something that was not previously possible because of patenting; and this decision could aid breast cancer researchers by providing greater access to information related to BRCA 1 and 2. 

Regardless, the Supreme Court’s decision that human genes cannot be patented is an important one. It establishes precedent that no company owns the rights to BRCA 1, BRCA 2, or any other human gene – and that is important for all of us.

However, it remains to be seen how the Supreme Court’s decision will alter current practice. Young Survival Coalition is hopeful it means that Myriad and other companies will continue to invest in technology and testing that helps us to better understand the origin of and/or risk of developing cancer that would ultimately improve patient outcomes.

I guess the question that needs to be asked is – could this decision discourage companies from investing in other gene mutation identification and/or tests that we don’t even know about yet? I don’t know the answer – but I think the question is an important one to ask.

While many people are applauding the Supreme Court today, I am giving them more of a pat on the back. To me, not allowing the patenting of human genes seems like a no-brainer. In the end, patients need to be the number one focus of our medical community, not profits.

The entire text of the decision can be found here.

We’d like your opinion! Please leave a comment below and tell us what YOU think.

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Skip the Blood Draw – Genetic Counseling 101

dna-ribbon-logo-resizedA couple of months ago I admittedly had no idea what genetic counseling was. I was familiar with genetics, and a person once told me I needed counseling, but I had no clue what a genetic counselor did. Genetic counselors are people with an advanced knowledge of genetics who are able to provide education on disorders like Down syndrome, Sickle cell anemia and hereditary breast and ovarian cancer. I have learned now that a genetic counselor can be a health educator, social worker, genealogist and your best friend when it comes to your health.

Increased awareness about health conditions is never a bad thing, but without knowledge, it can lead to fountains of misinformation. Panic may cause women to ask for genetic testing when they can avoid the blood draw altogether.

Angelina Jolie decided to have a double mastectomy due to having an increased risk for breast cancer because of a mutated BRCA1 gene. This news may have prompted many young women to run to their doctors and ask questions about their own risk for cancer. Angelina’s condition is called hereditary breast and ovarian cancer syndrome and accounts for 5–10% of all breast cancer cases. Discussing your family’s history can help you determine your risk. So before running to your doctor for genetic testing, consider speaking to a genetic counselor.
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What is a Genetic Counselor?

Genetic counselors are health professionals with master’s and specialized degrees in genetics and counseling. They work in a variety of patient settings and come from diverse educational backgrounds including biology, psychology and public health. Genetic counselors work with people to collect family history to identify genetic predispositions to health conditions and then order genetic testing when appropriate. During a genetic counseling session, the counselor will discuss your personal and family history and then provide recommendations to manage any conditions that may have been discovered.

In addition to helping formulate a treatment plan, a counselor can discuss the emotional implications of the results and find resources for you and your family. Genetic counselors work as part of the health care team — helping patients manage their conditions alongside physicians.

Here are three things you should know about genetic counseling:

1. Genetic counseling sessions are interactive! They are more like conversations rather than lectures. Questions, comments and concerns are welcomed and help make you a part of your healthcare team.

2. Genetic counselors are not mind readers. Besides knowing your personal health history, learning as much as you can about you family history before a session can help make the discussion even more productive. Make a list of conditions that may run on either side of your family.

3. How much will it cost? Coverage for genetic counseling varies by state and by health insurance provider. Call your provider for your coverage details.

Do I need a counselor?

There are many online tools that can help you assess your risk of breast and ovarian cancer and help you determine whether you need to speak to a genetic counselor. www.BreastCancergenescreen.org is a web-based tool that uses personal and family history to quickly identify who would benefit from genetic counseling concerning the BRCA genes.

The National Society of Genetic Counselors (NSGC) can help you find a genetic counselor near you. More information on genetic counseling can be found here: http://www.geneticalliance.org/counseling.guide.

This is not a paid advertisement for genetic counseling, but since being introduced to the profession I have realized its value. Acting out of fear can lead to negative health outcomes. Seeking education from a genetic counselor can help raise awareness about heredity breast and ovarian cancer. It can also save time and money and help you avoid an unnecessary needle prick.

Editor’s Note: It is estimated that 5–10% of breast cancer cases result from inherited mutations, including those in the breast cancer susceptibility genes BRCA1 and BRCA2. These mutations are present in far less than 1% of the general population but occur more often in certain ethnic groups such as those of Ashkenazi (Eastern European) Jewish descent. Women with BRCA1 mutations are estimated to have a 44–78% risk for developing breast cancer by 70 years of age; the corresponding risk for BRCA2 mutations is 31–56%.1

1. American Cancer Society. Breast Cancer Facts & Figures 2011- 2012. Available at: http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-030975.pdf

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Categories: Guest Bloggers

Introducing Our Newest State Leaders

In January 2013 YSC announced the launch of the new State Leader program.  Following a hugely successful initial launch with 31 state leaders, I am thrilled to report we have just accepted our second class that includes an additional 21 new volunteers.  In total there are 52 State Leaders located in 26 states across the country.  Ten of these states are brand new areas of outreach for YSC!

The YSC State Leader program links together a regional network of volunteer breast cancer advocates who are selected to represent YSC based on their experience and commitment to YSC’s mission.

State Leaders act as the link between YSC’s local communities (survivors, volunteers and health care providers) and the YSC Regional Field Manager staff.  Their contributions include identifying state resources, joining other key leaders on a Regional Leader Council and contributing to outreach, education and awareness activities throughout their region.

These experienced breast cancer advocates have shown an outstanding commitment to YSC and the women we support. The exceptional skills and talents within this group of State Leaders will make a significant impact on our reach and ensure that no young woman faces breast cancer alone.

Please join me in congratulating these remarkable State Leaders and, most importantly, thanking them for the outstanding work they do for YSC — without committed volunteers like our State Leaders, we would be unable to support as many young women affected by breast cancer.

SOUTH
MIDWEST
WEST
NORTHEAST
Arkansas Illinois Arizona Connecticut
Jennifer Wiseman Dana Stewart Krista Sullivan Jamie Pleva-Nickerson
Jennifer Linares
Florida California Maryland
Allison Eng-Perez Michigan Lisa Augustine Laurie Yori
Alyssa Millman April Robinson
Ishiuan Hargrove Colorado Virginia
Nebraska Bethany Aronow Rana Kahl
North Carolina Jennifer Barber Ariana Opp
Katerina Gmitter
Idaho
South Carolina Dana Bilbao-Miller
Rosie Wells
Heather Baird Oregon
Carol Hachey
Texas
Leslie Williams
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Celebrating at In Living Pink

After hearing the words “you have breast cancer,” you wonder if you will ever be happy again. For women who are young, I think it is even worse. Many are at a point in their lives where they should feel jubilant, free and excited for a long future — and those four words have the power to squash those sentiments in an instant.

I don’t think any young woman who has been told she has breast cancer will ever forget hearing those words. Some of us, like me, heard them over the phone and were not prepared for it at all. Others heard them in the doctor’s office surrounded by family. It doesn’t really matter — the impact is the same.

Chris Wragge, master of ceremonies, with the In Living Pink benefit committee.

Chris Wragge, master of ceremonies, with the In Living Pink benefit committee and me (2nd from right).

However, last Friday night at YSC’s annual In Living Pink gala, as I looked across a room full of young survivors dressed to the nines, I temporarily forgot those four words.

There is something about dressing up, putting on your best clothes and jewelry you don’t normally wear and going out. Every woman knows how this feels, cancer or no cancer … it is the feeling of looking beautiful and knowing it. It is the feeling of energy that comes with your hair looking awesome and makeup looking perfect. It is the smiles you get from strangers who see you and think of the last time they were also dressed up and went out. To me, this is a celebration of life. It feels good.

I can say from experience as a constituent and as the CEO of the organization, YSC excels in everything it does to support and educate young women with breast cancer and fulfill its mission.

From left to right: Tabetha Kay from Liv/giant; YSC CEO Jennifer Merschdorf; YSC Board President Lisa J. Frank; Steve Klein; Elysa Walk from Liv/giant.

From left to right: Tabetha Kay from Liv/giant; Me; YSC Board President Lisa J. Frank; Steve Klein; Elysa Walk from Liv/giant.

In addition, I believe quality of life is an important part of our work. Quality of life means different things to different people — but I think it also is illustrated when a young women who has lost her hair or gained 40 pounds from treatment gets dressed up and feels amazing being surrounded by other people that get her … they don’t judge but, rather, empower. With these people you don’t have to answer questions about why you look different … they already know, and they don’t care!

So last Friday night, as the dance floor rocked with young survivors, doctors, friends and family late into the night, I felt proud of YSC. I felt proud of how YSC got to that point, and I felt proud to know that every young survivor there felt at home and happy at that moment — forgetting those four words … then I joined them on the dance floor!

We extend a special thank you to honorees Celgene, Liv/giant and YSC’s founding members; Chris Wragge, our master of ceremonies; Lisa Frank, YSC board president; Benefit Chairs Stephanie Pendray, Dayna Varano and Jean Won; the In Living Pink Benefit Committee; volunteers; donors and everyone who attended and made the event so incredible!

Photos from this event are available for viewing on our In Living Pink Pinterest board. (http://pinterest.com/youngsurvival/nyc-ilp/)

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The sexiest woman in the world had a bilateral mastectomy? Really?

angelinaIt is nuts, but breast cancer in young women is becoming a sexy trendy topic. And today, Angelina Jolie, repeatedly named the sexiest woman alive, announced she had a bilateral mastectomy.

As I listened to the news this morning, I thought about my own bilateral mastectomy and its impact on how I thought about myself. Now, Angelina Jolie announced she’s had one and saying she won’t let such a life altering surgery steal her sexuality – why had I? Yes – of course it’s different, this was a preventive measure – but it’s certainly thought-provoking.

I was saddened to hear that Angelina had lost her mother to ovarian cancer and I know personally how much consideration and thought goes into a decision of a bilateral mastectomy. What I think is amazing is that she didn’t have to tell anyone … she could have kept it a secret. But she didn’t – she chose to tell the world, despite the fact that her brand has been built on other people’s perception of her sexiness.

I applaud Angelina’s efforts to raise awareness of the BRCA gene mutation by speaking out. Although I am slightly concerned that the messaging could create panic that all young women should be tested – which is not true. According to what we know today, BRCA (genetic) cancers only account for 5-10 percent of all breast cancer cases, a far cry from everyone.

However, everyone should ask questions about their family history and document all cancers and at what age they occurred on BOTH sides – maternal and paternal (Did you know it’s possible to inherit the BRCA gene mutation from your father?). If you are concerned, our partner organization Bright Pink, has created a tool to help you asses your risk, generating a report to take to your doctor. (http://www.brightpink.org/knowledge-is-power/assess-your-risk/). After using this tool, you and your doctor should talk about the next best steps, which should include speaking with a genetic counselor. This is a personal decision that you and your doctor will make together on a case-by-case basis.

Angelina was not diagnosed with breast cancer (thank God!) – but what about all of the young women, like myself, who have already been diagnosed? What does genetic testing mean for us? Again, your doctor should advise you if genetic testing is a good idea, so please make sure to have the discussion. I was diagnosed with breast cancer seven months after my mother was diagnosed, decided to have the test after genetic counseling, and found out I was NOT BRCA positive. This is information that my doctors and I use to make informed decisions about my treatment going forward – knowledge can be empowering.

Some of the concerns that young breast cancer survivors face every day can include body image issues, sexuality after cancer and the long-term effects of surgery. And it is hard. It is hard to feel sexy when you have no estrogen egging you on. It is hard to feel sexy when all you can see is the scars looking at you in the mirror. It’s hard to feel sexy when your body is no longer the body you once had. These are real issues and it is important to raise awareness of these survivorship issues and their impact on the quarter of a million young women who have been diagnosed with breast cancer in the US before their 41st birthday.

So as we watch the media unfold around Angelina’s choice to share this private decision, I hope that all of us use this news as an opportunity to encourage people to learn and ask questions about their own family cancer history and raise awareness that young women can and do get breast cancer. For those of you who have learned you have a BRCA gene mutation or would like to discuss concerns that you might be at risk with other young women in the same boat, YSC’s online community has a discussion group just for you: http://community.youngsurvival.org/index.php?/forum/9-risk-and-genetics/

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Categories: YSC SYNC - Survivors